I have recently been diagnosed with oral , vulval and esophageal lichen planus.
I use topical steroids to treat the oral and vulval lichen plans and have been proposed the following medication to treat my oesophageal LP. - Prednisolone, followed my methotrexate. I am interested to hear of the medications that have been used for others as this appears a rare condition with little knowledge of treatment.
I took Prednisolone for many years and it did help, but as a steroid, it has some longterm side effects. For example, it made my teeth brittle and I lost several teeth during the time I was taking it. The only med I take now is Celcept (mycophenolate) which is the drug given to organ transplant patients to help them not reject the new organ. I don't know if it helps or not: I need to have an endoscopy with dilation every 4 months or I can't eat without choking. Methotrexate is a very strong medicine, I will be curious to learn if it helps you or not.
@snowfire@sadea0208 Here is some information on LP and ELP. You might also see if NORD (National Organization for Rare Diseases). Keeps a list of doctors who know and treat this condition. https://rarediseases.org/rare-diseases/lichen-planus/
Let me know if you’re able to find some help.
I have not, but when my mother was alive, she had been diagnosed with it after years of using prescription steroidal inhalers for her bronchial problems.
I have recently been diagnosed with oral , vulval and esophageal lichen planus.
I use topical steroids to treat the oral and vulval lichen plans and have been proposed the following medication to treat my oesophageal LP. - Prednisolone, followed my methotrexate. I am interested to hear of the medications that have been used for others as this appears a rare condition with little knowledge of treatment.
Hi! I was diagnosed with Esophageal and oral lichen planus. It's now gone into the skin on my legs. Since I was diagnosed last December I have been using a Lidocaine topical med in my mouth and also a Dexamethasone mouth swish. The dexamethasone rinse can only be used for ten days infrequently. I don't swallow it! The lidocaine helps although it only numbs the tissue for about ten minutes. I have been offered steroidal (dexamethasone) pills. I have yet to take them by my choice. I use marijuana containing CBD and THC in the evenings and when I'm staying home. I only use Indica strain. This helps me more than anything!!! Eating is a big problem for me ! I have lost so much weight. Marijuana helps so I can eat a bit. It's very hard!
Thank you for your reply ! It is so daunting ! I am uncertain about the medications prescribed for me and the benefits they will bring , and the potential side effects that will impact me . This is all due to the lack of information available due to the rarity of the condition.
For my oral LP - I use flixonaise as a steroid mouthwash and also deflam mouthwash .
Just unsure about prednisone and methotrexate
Thank you for your reply ! It is so daunting ! I am uncertain about the medications prescribed for me and the benefits they will bring , and the potential side effects that will impact me . This is all due to the lack of information available due to the rarity of the condition.
For my oral LP - I use flixonaise as a steroid mouthwash and also deflam mouthwash .
Just unsure about prednisone and methotrexate
@suewq How long have you been dealing with this? Is a specialist helping you? Prednisone can give a kick start to helping the infection/disorder. And methotrexate is for long term.
What are your specific concerns about these medications?
The Esophageal Lichen Planus has now gone into my fingernail and toenail along with my esophagus, mouth and skin! Has anyone experienced this? My fingernail began to loosen as a new nail was beginning to grow underneath. It's so strange!! Has anyone experienced this in their nails? It's also causing nausea daily so I'm now on Zofran nausea medication! I was diagnosed in Dec. 2022! This seems to moving quickly in my body. It is extremely difficult to eat!!! I have lost 35 pounds. I'm 5'5" and now weigh 120lbs.! This disease is a shocking battle in my life! Ughhh😩
The Esophageal Lichen Planus has now gone into my fingernail and toenail along with my esophagus, mouth and skin! Has anyone experienced this? My fingernail began to loosen as a new nail was beginning to grow underneath. It's so strange!! Has anyone experienced this in their nails? It's also causing nausea daily so I'm now on Zofran nausea medication! I was diagnosed in Dec. 2022! This seems to moving quickly in my body. It is extremely difficult to eat!!! I have lost 35 pounds. I'm 5'5" and now weigh 120lbs.! This disease is a shocking battle in my life! Ughhh😩
@sadea0208 This must be so difficult! What is your doctor saying about this? Have you found the right medicines for your ELP? Here is a connection to GARD, the Genetic and Rare Disease
Group within NIH. They can help you find doctors and other resources to help you. https://rarediseases.info.nih.gov/contact
Can you call them this week?
@suewq How long have you been dealing with this? Is a specialist helping you? Prednisone can give a kick start to helping the infection/disorder. And methotrexate is for long term.
What are your specific concerns about these medications?
I started symptoms approx 5 years ago .
However only diagnosed about 15 months ago as everything was being labelled “menopause” .
I have lost 50 pounds now ,
My concerns about the medication is really that I do not know anyone else who has been diagnosed and treated for oral , vulval and oesophageal LP , and my gastroenterologist had never heard of this , and therefore I feel that it is a stab in the dark with the treatment suggested !
I think I am coming to the conclusion that I need to start this treatment and hope it has a positive impact
I started symptoms approx 5 years ago .
However only diagnosed about 15 months ago as everything was being labelled “menopause” .
I have lost 50 pounds now ,
My concerns about the medication is really that I do not know anyone else who has been diagnosed and treated for oral , vulval and oesophageal LP , and my gastroenterologist had never heard of this , and therefore I feel that it is a stab in the dark with the treatment suggested !
I think I am coming to the conclusion that I need to start this treatment and hope it has a positive impact
I have been receiving treatment for vulval LP for 15 months , oral for 6 months and my oesophageal LP has just been diagnosed , although suffered for about 2 years with this element which was originally put down to acid reflux
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I took Prednisolone for many years and it did help, but as a steroid, it has some longterm side effects. For example, it made my teeth brittle and I lost several teeth during the time I was taking it. The only med I take now is Celcept (mycophenolate) which is the drug given to organ transplant patients to help them not reject the new organ. I don't know if it helps or not: I need to have an endoscopy with dilation every 4 months or I can't eat without choking. Methotrexate is a very strong medicine, I will be curious to learn if it helps you or not.
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1 Reaction@snowfire @sadea0208 Here is some information on LP and ELP. You might also see if NORD (National Organization for Rare Diseases). Keeps a list of doctors who know and treat this condition.
https://rarediseases.org/rare-diseases/lichen-planus/
Let me know if you’re able to find some help.
-
Like -
Helpful -
Hug
1 ReactionI have not, but when my mother was alive, she had been diagnosed with it after years of using prescription steroidal inhalers for her bronchial problems.
Hi! I was diagnosed with Esophageal and oral lichen planus. It's now gone into the skin on my legs. Since I was diagnosed last December I have been using a Lidocaine topical med in my mouth and also a Dexamethasone mouth swish. The dexamethasone rinse can only be used for ten days infrequently. I don't swallow it! The lidocaine helps although it only numbs the tissue for about ten minutes. I have been offered steroidal (dexamethasone) pills. I have yet to take them by my choice. I use marijuana containing CBD and THC in the evenings and when I'm staying home. I only use Indica strain. This helps me more than anything!!! Eating is a big problem for me ! I have lost so much weight. Marijuana helps so I can eat a bit. It's very hard!
-
Like -
Helpful -
Hug
1 ReactionThank you for your reply ! It is so daunting ! I am uncertain about the medications prescribed for me and the benefits they will bring , and the potential side effects that will impact me . This is all due to the lack of information available due to the rarity of the condition.
For my oral LP - I use flixonaise as a steroid mouthwash and also deflam mouthwash .
Just unsure about prednisone and methotrexate
-
Like -
Helpful -
Hug
1 Reaction@suewq How long have you been dealing with this? Is a specialist helping you? Prednisone can give a kick start to helping the infection/disorder. And methotrexate is for long term.
What are your specific concerns about these medications?
The Esophageal Lichen Planus has now gone into my fingernail and toenail along with my esophagus, mouth and skin! Has anyone experienced this? My fingernail began to loosen as a new nail was beginning to grow underneath. It's so strange!! Has anyone experienced this in their nails? It's also causing nausea daily so I'm now on Zofran nausea medication! I was diagnosed in Dec. 2022! This seems to moving quickly in my body. It is extremely difficult to eat!!! I have lost 35 pounds. I'm 5'5" and now weigh 120lbs.! This disease is a shocking battle in my life! Ughhh😩
-
Like -
Helpful -
Hug
1 Reaction@sadea0208 This must be so difficult! What is your doctor saying about this? Have you found the right medicines for your ELP? Here is a connection to GARD, the Genetic and Rare Disease
Group within NIH. They can help you find doctors and other resources to help you.
https://rarediseases.info.nih.gov/contact
Can you call them this week?
-
Like -
Helpful -
Hug
1 ReactionI started symptoms approx 5 years ago .
However only diagnosed about 15 months ago as everything was being labelled “menopause” .
I have lost 50 pounds now ,
My concerns about the medication is really that I do not know anyone else who has been diagnosed and treated for oral , vulval and oesophageal LP , and my gastroenterologist had never heard of this , and therefore I feel that it is a stab in the dark with the treatment suggested !
I think I am coming to the conclusion that I need to start this treatment and hope it has a positive impact
-
Like -
Helpful -
Hug
1 ReactionI have been receiving treatment for vulval LP for 15 months , oral for 6 months and my oesophageal LP has just been diagnosed , although suffered for about 2 years with this element which was originally put down to acid reflux
-
Like -
Helpful -
Hug
1 Reaction